Testicular cancer

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Stage 1A seminoma (no chemo) - surveillance and symptoms - Im getting more worried

Stage1A_TC
Posted by

Hello,

This is my first time posting here so Id like to start with a brief introduction of myself since I will be participating on this forum. Let me start of by saying my first language is not English as im from the Netherlands.

My main goal is to both gather and share information on this journey and hoping to find some friends on the road. So feel free to ask me a question if you are reading this and have just been diagnosed, whenever I have time available I will answer questions.

End of februari 2019 I went to my regular doctor because of noticing a hard marble like structure which seemed to be sticking out of my left testicle. My doctor assured that considering my age (36) that a tumor is unlikely and said that it is nothing to worry about, he had a look at it and told me it was a spermatocele.
Being the somewhat stubborn patient that I am and taking into consideration that I had the feeling of pressurizing and pulsation flow through my pelvic area towards my scrotum I asked if I could get an ultrasound, which he then agreed on.
So early april 2019 I went for an ultrasound with in the back of my mind, well the doctor is most likely right so I did not have any anxiety at all going to the clinic where the ultrasound was done.
However during the ultrasound it quickly turned out that my instinct that that something didnt feel right (especially the pulsating feeling from my lower abdomen towards my scrotum and balls, radiating downwards to my inner thighs) turned out to be true.

3 days forward (8th of april) and lots of talks at aneasthology and fertility department of the hospital they finally removed the tumor, which later turned out to be a stage 1a seminoma with no risk factors. Tumor was 1.2cm in diameter, sphere shaped and there was no ingrowth in the tunica.
There for I was given no chemo and a CT scan done after the operation showed signs of metasasis. The only thing they found were 2 hemangiomas on my liver, which is none cancerous.
The same day they sent me home I arrived a call from the hospital that I should get to the hospital A.S.A.P. because they had found a post surgery internal bleeding.
So I went back to the hospital, they kept me overnight and the day after my hemaglobin started going up (indicating no active bleeding) and I was once again fired from the hospital.

Around 2 weeks after I started to have feelings of nausea every morning and noticed that I was getting swollen glands in my neck, persistent cough and somewhat shortness of breath (post anesthesia symptoms?) were also present but subsided within around a month.
According the doctor and the oncologist this could possibly due to an ear infection and I have to say I have always been prone somewhat to that. But after the earpain and pressure around the back of my skull subsided I was still left with the enlarged lymphs, which once again according to the doctor were not large enough to worry about.
Now my earpain due to going outside (windy weather seems to trigger it) more or less has been very mild. However the lymphs stay enlarged and the pressure on the back of my skull is persistent and is present almost daily and for long periods on days that it is there.

2 years ago I have done a 23andme test (the doctors here in the Netherlands do not seem to take it seriously unfortunetely), but it showed 4 genes that were considered a risk factor for testicular cancer including a somewhat uncommon gene. Also I have 2 genes (including 1 rare variant) that predispose me to glioma (brain cancer), hence my 'worrying' about the doctor/hospital due to financial reasons trying to send me away and trying to make me believe my swollen glands on the back of my head, back of my neck and front of my neck are due to an infection. However they have been persistently larger than normal for more than 5 months now. So I keep pushing my doctor to get it looked into.

Something else I keep noticing is that depending on how full my stomach is and time of the day I seem to get the same odd pulsating effect / low intensity pain around my belly button and slightly above, radiating downwards on the right side of my abdomen towards my scrotum and this often seems to give a feeling of radiating blood flow down my right innerthigh (once again I apoligize for the weird description but there is no other way to describe the 'pain', which I would rate as intensity 1 to 3 on a scale of 10.
The abdominal regions involved are: epigastric, umbilical, right lumbar, right iliac and right inguinal area and once every now and then the left iliac and left inguinal area.
The right inguinal area is slightly (but noticeably) 'bumped', so my doctor had me checked for another testicular ultrasound (due to persistent feeling of heavyness in my right ball too) and to get my inguinal area checked to rule out a hernia, this process has been repeated once more through 2nd opinion at a specialised cancer clinic which also showed no abnormalities in the right testes and also saw no signs of a hernia in the area.

Some other problem I seem to inconsistently getting (though on average least once daily), is a pressured feeling on my hand palms radiating to my ring and middle finger, the same type of radiating feeling i also seem to be getting below my calv radiating down to my ankle and the top of my feet, this seems to be happening nearly only on the left side of my body, both for my foot and hand. This also happens rarely in my left shoulderjoint but rarely

A few weeks ago I had a photo of my chest done, which was clear and saw no abnormalities, which Im very glad about but dont get me wrong my main symptoms seem to be my abdominal area, which upon both self palpation and doctor palpation noticed that the lymphs in my abdominal cavity/wall can be felt, this is also the case for both my inner thighs.

So upon talking with the doctor and looking at the medical history of my mother (crohn disease pretty much all her life), I agreed on getting a gastroscopy and colonoscopy, which found gastritis in the stomach. I am currently still waiting for lab results if this is due to a H. Pylori infection or not. Knowing that and having looked upon the symptoms of antral gastritis (which was the diagnosis) the symptoms listed in both scientific articles aswell as what my doctor told me we both agreed that it was not the reason for my symptoms. I obviously will get my gastritis treated dont get me wrong.

In particular the area directly above my belly button and just right of my belly button give a feeling as if there if a slight open wound just under the skin where the lymphs are, the 'pain' which is only felt upon palpation mainly is very mild (1 on a scale of 10) and is best described as a burning/stinging type of pain as if someone drops a few drops of alcohol on an open wound. This pain is directly where the lymph nodes seem to be somewhat harder and enlarged. To clarify the lymph nodes can be felt all over my right flank of my abdomen and they are definetely enlarged compared to 'my old self' of roughly 2 years ago.

The hospital has planned a CT scan for my abdomen for the 25th of november and they seem rather careless with both me and my doctor addressing the urgency of my symptoms which are clearly not normal.
If someone who has been diagnosed with testicular seminoma/germa/teratoma spread to the abdomen could shed some light on their symptoms and their diagnosis I would be ever thankful.

Oh and one last thing for those worrying if orchiectomy will affect your sex life and hormonal values, I can only speak for myself but my libido and hormonal values recovered after around 2.5month, this is also when the pale look (anemia?) on my face disappeared.


Below are my bloodtest results:

6 april ( 2 days before orchiectomy left side):
AFP <7
HCG beta unit 3 iu/L
LDH (IFCC) 206 iu/L


15 may:
LDH (IFCC) 180 iu/L


23 august:
AFP <7
HCG beta unit <1 iu/L
LDH (IFCC) 190 iu/L

Tony soprano
Posted by

Hello I had Seminoma too. But mine spread and I had to have 3 rounds of BEP. I completely understand your worry at this time. But looking at how many symptoms you have listed I would suggest that you may be reading a little bit too much into it all. From my research and understanding, the typical path of spread for Seminoma is from the testicles to the lymph nodes in the abdomen, then in advanced cases to the lungs. But it is virtually unheard of for a Seminoma to go any higher than that. Also if you look at the typical route of the lymphatic drainage in the body, which is the route Seminoma takes when spreading, it will stay on the same side of the body as the affected testicle. So if you had cancer in your left testicle your liver cannot typically be affected. Non Seminoma however is a totally different kettle of fish. Try not to read too much into blood results either with Seminoma because they are not a reliable diagnostic tool for Seminoma.  If your lungs are clear then your neck will almost definitely not be affected. Obviously I’m not a doctor and anything I say is picked up through what I’ve read and my own experience. But I do think your experiencing some degree of health anxiety. Given what’s happened to you this is totally understandable. I went down this road myself, worrying about every single ache and pain. But 2 years after chemo I’m fine. Well  I have had tinnitus, and gallbladder polyps to deal with, but I’m here. I’m getting up every day and going to work. Don’t be in a rush to get back to where you was before. There is a chance you will never feel the same again. But you can discover a new you and live your life to the full. 

Tony Soprano

Classical Seminoma, initially stage one.

Oncologist initially  unclear if elevated lymph node is due to cancer. bumped up to stage two B after CT scan 3 months later. Further spread to 2 lymph nodes and increase in size.

Undergone 3 cycles of BEP at Derby Teaching Hospital and had the all clear on 9/2/17

Now on ten years of surveillance 

Odbball
Posted by

Hi Stage 1,

Sorry you find yourself here, but welcome.  A theme that comes through regularly is that doctors misdiagnose TC as an abscess, or infection, and we as patients have to be persistent, and ask for an Utrasound. Its not surprising that doctors misdiagnose it as, on average a GP will see one case of TC every 25 years.  Its rare.

Your TC seems pretty straight forward, stage 1a seminoma, it doesn't get much better than that.  Congratulations!

You do clearly have other medical concerns that you need to pursue, and be as insistent as you have been so far to get to the bottom of your concerns.

Good luck with in the future.

Take care

Dan

Stage1A_TC
Posted by

Hi Tony,

Thanks for the reply.

Let me start of by saying that I only have a healthy amount of anxiety (enough to not get send away by doctors if a real problem occurs so i can stand up for myself).

My abdominal problems are persistent and I cant see them going away on their own, hence my worry (which is far from unreasonable).

Your signature states that you have had spread to lymphs, I assume this was to your abdomen? If so what symptoms did you notice from it.

Also glad to hear that you are clear so far, this certainly gives me some hope.

Stage1A_TC
Posted by

Hi Dan,

I agree that stage 1a is as 'good' as it gets, however I was quite shocked with the amount of confidence the doctor classed it as a spermatocele. Obviously we are all human and I have forgiven the fact that it was missed upon judgement by the doctor.

As you can imagine I did get another doctor afterwards who has been very helpful so far in the process of addressing my problems.

Other than that I hope that someone on the forum that has experienced metastasis later (Ive read it can happen as early as a few months in) on after removal.

Have a nice day

Tony soprano
Posted by

Hi mate I was initially scanned after my testicle was removed. They found an enlarged lymph node near my kidney which was only slightly enlarged. They opted for surveillance and then in my next routine scan I had 3 elevated lymph nodes, 2 of which were larger than 35mm. So after that I had 3 rounds of BEP. Which was horrific. Please don’t worry too much. Stage 1A Seminoma is as good as it gets. If there is such a thing. Even if something comes up in the future you will still have an 85% chance of cure. The chemo is not something I would take on unless absolutely essential.  My advice to you is crack on with your life until you hear otherwise. Your always going to have the anxieties at scans etc but in time this will become easier for you to cope with.

all the best.

Tony Soprano

Classical Seminoma, initially stage one.

Oncologist initially  unclear if elevated lymph node is due to cancer. bumped up to stage two B after CT scan 3 months later. Further spread to 2 lymph nodes and increase in size.

Undergone 3 cycles of BEP at Derby Teaching Hospital and had the all clear on 9/2/17

Now on ten years of surveillance